CSI EAPC 2021 summary

Cicely Saunders Institute

Welcome to the 17th World Congress of the EAPC 2021 This document highlights the Cicely Saunders Institute, King’s College London contributions at the EAPC congress. We are looking forward see you during EAPC. You can also visit our website at www.kcl.ac.uk/cicelysaunders

Wednesday 6th October

PL= Plenary PS= Parallel Session

FC=Free communication

* Central European Time (CET): see how this translate in your own time zone link

• 9.00 to 9.50 am Opening Ceremony (PL 1): Room 1 • EAPC Award: Inequalities and Injustice in Palliative Care. Higginson I • 10.00 to 10.50 am PS 2 (A) Innovative models of home palliative care: Room 3 • Updated Cochrane review results on the effectiveness and cost-effectiveness of home palliative care services for adults. Gomes B., de Brito M., Calanzani N., Curiale V., McCrone P., Higginson I. [link to prerecorded talk]

• Community-Based Short-Term Integrated Palliative Care for Older People with Chronic Noncancer Conditions: A Randomised Controlled Mixed Method Trial. Evans C., Elderly Optimising PalliaTive care for Older People (OPTcare Elderly) [link to pre-recorded talk] • 11.00 to 11.50 am PS 3 (B) Improving care for people unable to self-report: the role of person-centred proxyreported assessment measures: Room 1 • Using Structured, Person-Centred Measures for People with Dementia Unable to Self-Report to Identify and Meet Palliative Care Needs: Reflections from Empowering Better End of Life Dementia Care. de Wolf_Linder S., Kupeli N., Crawley S., Reisinger M., Kenten C., Gohles E., Ellis-Smith C., Davies N., Moore K., Sleeman K., Schubert M., Sampson E.L., Murtaugh F., Evans C.J [link to pre-recorded talk] • Person-Centred Proxy Measures: Clinical and Methodological Challenges, and Recommendations to Maximise Valid and Reliable Assessment. Ellis-Smith C., Hodiamont F., Dawkins M., Tunnard I., Bausewein C., van der Steen J., Klapwijk M., Murtagh F., Higginson I., Evans C. [link to pre-recorded talk] • Also don’t miss this presentation based on IPOS-Dem which was originally developed at CSI by the POS team: Assessing Palliative Care Needs in People with Dementia Using Proxy Measurement: Validation of the Integrated Palliative Care Outcome Scale for Dementia (IPOS-Dem) in German Nursing Homes [link to pre-recorded talk]

• 11.00 to 11.50 am FC 03 (A) Innovation and new technologies: Room 3 • Measurement Equivalence of the Paper-based and Electronic Version of the Integrated Palliative Care Outcome Scale: A Randomised Crossover Trial. Bolzani A., Kupf S., Hodiamont F., Burner-Fritsch I., Bausewein C., Ramsenthaler C. Abstract number: A-02 [link to pre-recorded talk]

• Implementation of eHealth Interventions to Support Assessment and Decision Making for Residents with Dementia in Care Homes: A Systematic Review. Gillam J., Davies N., Aworinde J., Yorganci E., Anderson J., Evans C. Abstract number: A-09 [link to pre-recorded talk]

Cicely Saunders Institute * Central European Time (CET): see how this translate in your own time zone link

PL= Plenary PS= Parallel Session

Wednesday 6th October

FC=Free communication

• 1.00 to 2.50 pm EU funded Palliative Care projects: Room 1 • EMBED-Care - Empowering Better End of Life Dementia Care. Evans C. • Children's Palliative Care Outcome Scale (C-POS). Braybrook D. • 3.00 to 3.50 pm Plenary session (PL2): Room 1

• Inclusivity in Palliative Care – Are We as Good as We Think? Harding-Swale R. • 4 to 4.50 pm PS 5 (F) Economics of palliative care: new approaches to understand and demonstrate effects: Room 2 • Projecting Future Needs, Costs and Outcomes in Palliative Care: An Economic Policy Evaluation for the Department of Health (Ireland). May P., Normand C., Kenny R.A., Tysinger B., Ryan K [link to pre-recorded talk] • 6.00 to 6.50 pm FC 05 (R) COVID 1: Room 3 • Changes in Patterns of Mortality and Place of Death during the COVID-19 Pandemic: A Retrospective Analysis of Data from the Four Nations of the UK. O’Donnell S., Bone A., Finucane A., Higginson I., Barclay S., Sleeman K., Murtagh F. Abstract number: R-09 [link to pre-recorded talk]

Cicely Saunders International Annual Lecture 2021 ‘‘The changing landscape of pain management in palliative care: Long term opioid therapy?’’

Speakers: Professor Per Sjøgren

Wednesday 8th December 2021 17.00 to 18.00 (UK Time)

Click here to sign up today

(Hosted virtually, Free to attend, CPD certified)

Thursday 7th October • 4.00 to 4.50pm PS13 (C) Children and Young People: The Hidden Carers: Room 3 • Children and young people caring for dying parents in the UK. Marshall S [link to pre-recorded talk] •

6.00 to 6.50 pm PS 15 (Q) Researcher Award Session: Room 3 •

Early Researcher: Improving patient and family care using patient centred outcome measures - from development to implementation into practice. Barbara Antunes [link to pre-recorded talk]

Cicely Saunders Institute * Central European Time (CET): see how this translate in your own time zone link

Friday 8th October •

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Factors Associated with Emergency Department Attendance by People with Dementia Approaching the End-of-Life: A Systematic Review. Thoms L., Evans C., Cripps R., Leniz J., Yorganci E., Sleeman K. Abstract number: J-03 [link to pre-recorded talk]

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Patterns of Unplanned Hospital Admissions among People with Dementia: From Diagnosis to the End of Life. Yorganci E., Stewart R., Sampson E., Sleeman K. Abstract number: J-09 [link to prerecorded talk]

11.00 to 11.50 am PS17 (D) Exploring New Dimensions in Dementia Palliative Care: Making Research Work in Practice: Room 1 Providing a Firm Base: A System-Based Logic Model of Integrated Palliative Dementia (the EMBED-Care Programme). Evans C., Sampson E., EMBED-Care [link to pre-recorded talk]

11.00 to 11.50 am FC 12 (M) PC identification and impact: Room 2 •

Concurrent Validity and Prognostic Utility of the Needs Assessment Tool: Progressive Disease Heart Failure. King C., Khamis A., Ross J., Murtagh F.E.M., Johnson M.J., Ramsenthaler C. Abstract number: M-05 [link to pre-recorded talk]

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2.00 to 2.50 “Don’t Forget the Children” launch: Room 3

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3.00 to 3.50 pm, EAPC Research Network Junior Forum: Room 2

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FC=Free communication

10.00 to 10.50 FC 11 (J) Dementia and Care homes: Room 1

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PL= Plenary PS= Parallel Session

Challenges and opportunities in palliative care research. Higginson I.

3.00 to 3.50 pm Paediatric Palliative Care Day FC 15 (I) Sharing learning from across the globe: Room 3 •

What Matters to Children and Families Facing Advanced Cancer? Identification of Priority Outcomes to Improve Paediatric Palliative Care in Turkey and Jordan. Boufkhed S., Yurdusen S., Alarjeh G., Ahmed F., Alrjoob W., Sengelen M., Cemaloglu M., Aydin B., Kutluk T., Shamieh O., Harding R. Abstract number: I-07 [link to pre-recorded talk]

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Existential Concerns of Children and Young People with Life-limiting or Life-threatening Conditions. Scott H., Coombes L., Harðardóttir D., Braybrook D., Roach A., Downing J., Bluebond-Langner M., Murtagh F., Farsides B., Harding R., on behalf of C-POS. Abstract number: I-15 [link to pre-recorded talk]

• 6.00 to 6.50 pm Plenary session (PL6): Room 1

• Analgesic Prescribing Patterns for People Dying with and without Dementia in the UK: General Practice Cohort Study. Sampson E.L, Bazo Alvarez J.-C., Sleeman K., Petersen I. [link to prerecorded talk]

Cicely Saunders Institute

Posters: A Posters Innovation and New Technologies • Reilly C.C., Shiner E., Price M., Higginson I.J. Internet Accessibility and Willingness of Patients with Chronic Respiratory Disease to Use an Internet-based Breathlessness Self-management Intervention. Abstract Number: A-23 [link to poster] D Posters Older People •

Lin C.-P., Tsay M.-S., Chang Y.-H., Chen H.-C., Wang C.-Y., Wu C.-Y. Comparing patients’ survival, place of death and medical utilization between those who receiving hospital based palliative home care and community based palliative home care in Taiwan: A retrospective cohort study. Abstract Number: D-08 [link to poster]

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Yorganci E., Sampson E.L., Gillam J., Aworinde J., Leniz J., Thoms L., Cripps R., Stewart R., Sleeman K. Quality Indicators for Palliative Care of Older, Frail People and People with Dementia Using Routinely Collected Electronic Datasets: A Systematic Review. Abstract number: D-17 [link to poster and audio presentation]

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Aworinde J., Ellis-Smith C., Gillam J., Roche M., Coombes L., Yorganci E., Evans C. Using Person-centred Outcome Measures to Enable Shared Decision-making and Improve Outcomes of Care for People with Dementia and Their Family Carers: A Systematic Review. Abstract number: D-22 [link to poster]

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Gutjahr J., Bone A., Sleeman K. Prevalence and Factors Associated with Unfavourable Interventions in the Last Year of Life of People with Dementia: A Systematic Review with Narrative Synthesis. Abstract number: D-23 [link to poster]

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e Nooijer K., Pivodic L., Van Den Noortgate N., Pype P., Evans C., Van den Block L. Timely Short-term Specialized Palliative Care Service Intervention for Frail Older People and Their Family Carers in Primary Care: Development and Modelling of the Intervention Using Theory of Change. Abstract number: D-32 [link to poster]

E Posters Education and Advocacy •

Lovell N., Etkind S., Prentice W., Higginson I., Sleeman K. The Sound of Anxiety: Exploring the Effect of Audio Recordings of Breathing on Self-reported Breathlessness. Abstract number: E-24 [link to poster]

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Ahmed F., Kirazlı M., Sengelen M., Yurdusen S., Cemaloglu M., Boufkhed S., Aydin B., Harding R., kutluk T. Palliative Care in 2020 & Beyond Workshop: A Platform to Develop Palliative Care Advocacy in Turkey.

Abstract number: E-25 [link to poster]

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G Posters Disadvantaged Populations •

Bajwah S., Edmonds P., Yorganci E., Chester R., Russell K., Lovell N., Marsh L., Sleeman K. Examining the Association between Ethnicity, Socioeconomic Deprivation and Receipt of Hospital-based Palliative Care for People with Covid-19 - A Dual Centre Case Series in the UK. Abstract number: G-06 [link to poster and audio presentation]

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Bajwah S., Koffman J., Hussain J., Hocaoglu M., Fraser L.K., Walshe C., Oluyase A.O., Bradshaw A., Allwin C., Cripps R.1, Higginson I.J., Murtagh F.E. A Personalised Approach isn’t Always Enough - Specialist Palliative and Hospice Services Response to People from Ethnic Minority Groups Diagnosed with COVID-19: An Observational Study (CovPall). Abstract number: G-10 [link to poster and audio presentation]

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Reid E., Ghoshal A., Kizilbash A., Brackett A., Jingjing C., Normand C., May P. Out-of-Pocket Costs Near End of Life in Low- and Middle-income Countries: A Systematic Review. Abstract number: G-09 [link to poster]

H Posters Psychological, Social and Spiritual Care •

Penfold C., Cottrell L., Evans C., Ashford S., Burman R., Silber E., Nicholas R., Farsides B., Williams V., Koffman J. “Most of us Don’t Feel Like we’re Dying.” Exploring the Relevance and Role of Advance Care Planning for People Severely Affected by Multiple Sclerosis: A Qualitative Interview Study. Abstract number: H-21 [link to poster]

I Posters Paediatric Palliative Care •

Coombes L., Ellis-Smith C., Gao W., Harðardóttir D., Braybrook D., Scott H., Downing J., Bluebond-Langner M., Fraser L., Murtagh F., Harding R. Modified Delphi Survey to Ascertain Stakeholder Consensus on Priority Outcomes for Inclusion in the Children’s Palliative Outcome Scale (C-POS). Abstract number: I-31 [link to poster]

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Nogueira A., Correia D., Loureiro M., Gomes B., Cancelinha C. Complex Chronic Conditions in Children: Hospital Use in the Last Year of Life and Involvement of Pediatric Palliative Care. Abstract number: I-32 [link to poster]

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Nkhoma K., Mwalabu G., Bristowe K., Lungu E., Harding R. Modelling an Appropriate Pain Selfmanagement Intervention for Adolescents with HIV/AIDS in Malawi. Abstract number: I-46 [link to poster]

J Posters Public Health and Epidemiology: •

Leniz J., Yi D., Yorganci E., Thoms L., Suji T., Cripps R., Higginson I.J, Sleeman K.E. Exploring Costs, Cost Components and Associated Factors among People with Dementia Approaching the End of Life: A Systematic Review. Abstract number: J-11 [link to poster]

K Posters Policy, including International Developments •

Sleeman K., Timms A., Gillam J., Anderson J., Harding R., Sampson E., Evans C. Priorities and Opportunities for Palliative and End of Life Care in National Health Policies: A Documentary Analysis.

Abstract number: K-09 [link to poster]

•

Oliver D., Borasio G.D., Patrick C., Nilay H., Lorenzl S., de Visser M., Vanopdenbosch L., Veronese S., Voltz R. A European Survey of the Palliative Care of People with Amyotrophic Lateral Sclerosis. Abstract number: K-05 [link to poster and video presentation]

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Li H., Guo P., Gao W., Cui X., Guo Y., Lu L., Han Y., Harding R. Towards Person-centred Care for People with Advanced Cancer and their Families in China: What Core Outcomes Matter? Abstract number: K-10 [link to poster]

Cicely Saunders Institute

L Posters Development and Organization of Services •

Firth A.M, Lin C.P., Goodrich J., Brown D., Harding R., Tutt L., Murtagh F.EM, Evans C.J. Out-of-Hours Care for Patients Nearing the End of Life in the Community and their Families. Systematic Review of Key Processes, Components and Outcomes. Abstract number: L-23 [link to poster]

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Gallagher J., Winkler T., Tunnard I., Kenten C., Sampson E.L., Evans C. Person-centred Care in Dementia at the End of Life: A Scoping Review and Concept Analysis. Abstract number: L-26 [link to poster]

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Rente J., Cunha M., Gomes B., Nunes R. Developing a “Fast-track” Protocol to Identify and Manage Adult Patients with Palliative Care Needs at the Emergency Department: An Initial Qualitative Study of a Mixedmethod Sequential Design. Abstract number: L-32 [link to poster]

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Nkhoma K., Gwyther L., Farrant L., Petrus R., Petersen I., Giusti A., Harding R. A Systematic Review of the Effectiveness of Person-centred Interventions for Serious Physical Illness in Terms of Self-report Outcomes and Costs. Abstract number: L-35 [link to poster]

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Khamis A.M., Davies J.M, Bradshaw A., Landon A., Dodds N., Proffitt A., George R., Boland J.W , Santarelli M., Sartain K., Richardson H., Murtagh F.E.M. Demonstrating the Impact of Palliative Care: A Secondary Analysis of Routinely-collected Person-centred Outcomes Data among Hospice Inpatients. Abstract number: L-58 [link to poster]

M Posters Primary and Integrated Care •

Nkhoma K., Farrant L., Mzimkulu O., Hunter J., Wei G., Maddocks M., Gywther L., Harding R. Prevalence, burden and predictors of physical and psychological symptoms in a chronic lung disease population. A crosssectional study from South Africa. Abstract number: M-07 [link to poster]

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Leniz J., Henson L.A, Potter J., Gao W., Newsom-Davis T., Ul-Haq Z., Lucas A., Higginson I.J, Sleeman K.E. The Association of Primary Care Services with Emergency Visits and Hospital Admissions at the End-of-Life in People with Cancer: A Retrospective Cohort Study. Abstract number: M-11 [link to poster]

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de Wolf-Linder S., Schubert M., Ellis-Smith C., Reisinger M., Gohles E., Hodiamont F., Murtagh F.E. Cultural Adaptation of the Integrated Palliative Care Outcome Scale for Dementia (IPOS-Dem) for the Swiss Context: A Focus-group Interview Study with Relatives, District Nurses, and Acute Care Nurses. Abstract number: M20 [link to poster and video presentation]

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Rente J., Freire E., Cunha M., Gomes B., Nunes R., Oliveira R., Brito Lobato C. Why Are Patients with Palliative Care Needs Admitted to the Emergency Department? A Retrospective Cohort Study. Abstract number: M-25 [link to poster]

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Farrant L., Gwyther L., Nkhoma K., Harding R. The Use of a Workshop Format to Develop a Theory of Change for the Integration of Palliative Care into Primary Care for Patients with COPD in Cape Town.

Abstract number: M-28 [link to poster]

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Seiça Cardoso C., Gomes B., Prazeres F. Family Physicians’ Perspectives about Their Role in Palliative Care: Double Online Focus Groups. Abstract number: M-32 [link to poster]

Cicely Saunders Institute

N Posters Communication •

Martina D., Geerse O.P, Lin C.P., Kristanti M.S, Bramer W.M, Mori M., Korfage I.J, van der Heide A., Rietjens J.A.C., van der Rijt C.C.D. Asian Patient’s Willingness to Engage in Advance Care Planning: A Mixed-method Systematic Review and Conceptual Framework. Abstract number: N-21 [link to poster]

Q Posters Research Methodology and Methods •

Bhardwaj T., Anand S., Higginson I., Hocaoglu M., POS Development Team. Translation and Cross-cultural Adaptation of Integrated Palliative Care Outcome Scale (IPOS) in Hindi. Abstract number: Q-15 [link to poster and video presentation]

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Long V., Cheung Y.B., Qu D., Lim K., Lee G., Yee A., Guo P., Harding R., Yang G. Validity and Reliability of the English and Translated Chinese Versions of the Integrated Palliative Care Outcome Scale (IPOS) in Singapore.

Abstract number: Q-23 [link to poster]

R Posters COVID 19 •

Cripps R.L, Sleeman K.E, Hocaoglu M.B, Oluyase A.O, Maddocks M., Bajwah S., Murtagh F.EM, Preston N., Bradshaw A., Dunleavy L., Fraser L.K, Higginson I.J, on behalf of the CovPall study team. Factors Associated with Busyness among Hospice and Palliative Care Services during the COVID-19 Pandemic: An International Survey (CovPall). Abstract number: R-04 [link to poster]

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Yurduşen S., Aydın B., Ahmed F., Boufkhed S., Harding R., Kutluk T. The Experiences of Adolescents with Cancer during the COVID-19 Pandemic in Turkey. Abstract number: R-43 [link to poster]

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Lin C.-P., Boufkhed S., Kizawa Y., Mori M., Hamzah E., Aggarwal G., Namisango E., Higginson I.J, Goh C., Harding R. Preparedness to face the COVID-19 pandemic in palliative care services in the Asia-Pacific region: a rapid online survey. Abstract number: R-51 [link to poster]

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Iyer P., Sleeman K.E. The Role and Response of Care Homes to Palliative Care Needs in the COVID-19 Pandemic: A Systematic Review. Abstract number: R-57 [link to poster and video presentation]

Other posters: • Oancea M., Palmer Z., Wiseman T., Bell C., Westwood G., St Barnabas Hospices Research Interest Group. The Value of Investment in Nursing Leadership to Build Research Capability and Capacity in Hospices and Deliver High Quality Research within the Multidisciplinary Team. Abstract number: L-73 [link to poster and audio]

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